Author: Poorna Bell

When UK suicide rates were released last year, there was a sigh of relief: perhaps the tide was turning. While the suicide rates in young people were deeply concerning, rates for men – which had been consistently high since 1981 when the Office for National Statistics started recording – had finally dropped.

This year, however, seems to have reversed that optimism. The increase in death by suicide overall has jumped by 11.8 per cent. The latest set of statistics show suicides among men have risen by an extra 521 deaths between 2017 and 2018, with a sharp increase of 31 per cent for young men aged between 20 to 25.

But while female suicide has remained mostly at the same rate, the rate in young girls and women aged 10 to 24 has risen by 83 per cent in the last six years – a record high. Since 2012 the rate has increased from 1.8 deaths per 100,000 females (106 deaths) to 3.3 in 2018 (188 deaths).

Some of the increase can be explained by coroners now using a broader standard of proof to record suicide. Previously, the higher standard of proof required to record a death as a suicide meant suicides were likely to be under-reported – a long held bugbear for mental health campaigners.

Professor Louis Appleby, professor of psychiatry at University of Manchester, leads the National Suicide Prevention Strategy for England. He told i the rise in young people is cause for concern because it’s following a different pattern to other age groups.

“Suicide rates are strongly linked to deprivation,” he says, “and it’s possible that young people experience this differently. We used to think it equated with unemployment but now economic adversity is more diverse: debts, job insecurity, in-work poverty, zero hours, lack of suitable housing.”

‘“What comes across is a more intangible deprivation,” he explains. “They are the most highly educated generation we’ve seen but they struggle to find stable jobs. They live in one of the richest countries in the world but can’t afford to rent a flat’ – Professor Louis Appleby

The increase in anxiety in young people for instance, isn’t because they are less resilient or more prone to it, but because there is a different set of drivers.

“What comes across is a more intangible deprivation,” he explains. “They are the most highly educated generation we’ve seen but they struggle to find stable jobs. They live in one of the richest countries in the world but can’t afford to rent a flat. Is this a society that treats people fairly, that has something to offer, a future I want to be part of, based on the right values? If enough young people feel the answer is no, there are some who are vulnerable for other reasons who will be put at risk.”

As for girls and young women specifically, one of his studies found many of the stresses facing teenagers before they died – exam stresses, bullying, bereavement – were more common in girls.

The Mix, a multi-channel support service for young people under 25, told i girls and young women comprise of a large portion of their helpline callers. “Around a quarter of users mention depression (27.8 per cent) and or self-harm (22.9 per cent). A fifth (20.4 per cent) talk about feelings and emotions, 14.7 per cent mention anxiety and, interestingly, 11.4 per cent talk about family and 9.4 per cent talk about relationships,” a spokesperson said.

“It makes people feel like everyone else has a perfect life, when in reality this is far from the truth in my opinion,” Hannah says of social media. (Photo: KIRILL KUDRYAVTSEV/AFP/Getty Images)

Social media is often blamed as a catalyst for girls and young women feeling suicidal, because it supercharges feelings of inadequacy and worthlessness. Hannah, 21, who has had suicidal thoughts since she was 14, believes that it’s true, saying her first experience of it was due to low self esteem and having no confidence in herself.

“It makes people feel like everyone else has a perfect life, when in reality this is far from the truth in my opinion,” she says of social media.

Hannah made an attempt on her life in April, year after losing her grandmother and experiencing a depressive episode. She then made another attempt at the end of May. “I felt like it was my only option left,” she says. “Little did I know it definitely wasn’t my only option and I am lucky to be alive today to support people and give out advice myself.”

Hannah’s personal experience is that she found Samaritans very helpful, was seen very quickly by services, and never felt judged. But mental health campaigner Anneli Roberts, who runs the Pigletish blog, says she doesn’t think there are enough resources to help everyone.

“Despite reports of ‘investments’ into mental health services, the average local authority has increased its spending by just one per cent” – Natasha Devon

“In Wales, where I live now, there are no government funded IAPT services like in England. People have to rely on the services provided by charities if they can’t afford to pay privately. When I was living in England it felt very much like a postcode lottery.”

Natasha Devon MBE, campaigner and author of A Beginner’s Guide to Being Mental, agrees lack of services is a huge issue. “Despite reports of ‘investments’ into mental health services, the average local authority has increased its spending by just one per cent. Thresholds for accessing treatment are high, waiting lists are long.”

An anonymous source who works in mental health policy, told i while suicide prevention work such as NHS plans, local authority led plans, statistical monitoring and guidance are good, the larger contextual issues need to be addressed.

He says the high rates are “symptomatic of not listening to and acting on the concerns of our future generations and being prepared to say we need to really change this.”

For now, it seems to be a case of working out a strategy that is specific to the issues, concerns and challenges facing girls and young women specifically, as well as reducing the harms caused by broader social factors such as social media, bullying and harassment.

On 6 September 2018, history was made in India when Section 377 of the Indian Penal Code – the act that criminalised homosexuality – was repealed. It was a landmark decision for so many reasons, not least because it meant people could love and be who they wanted, and not be discriminated against by law.

It also freed people from the last grip of colonial rule – Section 377 came into force in 1861 when the British occupied India.

Across the pond, while the LGBTQ+ British Indian community isn’t directly affected by the ruling, there is a ripple effect in the conversations taking place around acceptance and understanding. It’s critical when many LGBTQ+ Asians have felt invisible in the mainstream Pride movement, and have had to balance acceptance within their own families, as well as acceptance from within the LGBTQ+ community.

Afshan D’souza-Lodhi, Editor in Chief of The Common Sense Network, who identifies as bisexual, says: “It meant we were able to have similar conversations in our homes. We could openly talk about celebrities who had hidden their sexuality, non-hetero representations of sexuality in the form of statues and idols dotted around rural villages. And most importantly, we could talk about ’that’ gay auntie or uncle or cousin, or even ourselves.”

Here i talks to three British Indian people about their own experiences of coming out, visibility and the impact of Section 377 on their own lives.

My grandma tells my boyfriend he is like a grandson

I identify as non-binary and pansexual. When I was younger, I remember feeling attracted to a boy in school, but pursuing it wasn’t an option. I had girlfriends and my school was pretty homophobic.

There was this one kid who used to call me woman all the time. It wasn’t until I went to university that I moved away from home and met other people who were queer.

There’s a lot of stigma around South Asian parents and how bad they are with queer children, but I grew up in a really loving family who are East African Gujarati. It wasn’t a homophobic household at all.

But it wasn’t necessarily something they wanted. When I’d bring boys home, my dad would say: “Can you not sit too close together?” if it was in front of his friends. Coming out to your parents is one thing, but them having to come out to all of their friends is a different thing. They just don’t want to deal with that aggro, and that’s okay.

‘You want to avoid confrontation, and you assume they aren’t going to accept you, so you don’t give them a chance. But then you lose out on family relationships and that’s really sad’

I came out to my Mum when I was at university and told her I’d started seeing someone. She asked who ‘she’ was and I said: “Well actually, it’s a he.” I then called my dad to tell him. The next time I went to see them, I came armed with scientific reports and research to prove homosexuality is normal in all species.

I also reminded them of a story of a married man they knew who spent years being dishonest with his wife and kids because of his closeted reality and how his story ended in chaos. They accepted it pretty quickly.

I’m now in a place where I can bring home my boyfriend to extended family dinners and my grandma says cute things to him like: “You’re my grandson too.”

I distanced myself from extended family, however, and didn’t end up going to family functions for about six years. You want to avoid confrontation, and you assume they aren’t going to accept you, so you don’t give them a chance. But then you lose out on family relationships and that’s really sad. I’m now in a place where I can bring home my boyfriend to extended family dinners and my grandma says cute things like: “You’re my grandson too” to him.

I learned to be proud of who I am after many years of existing in this space. That feeling grows every year and you learn to use your voice.

Acceptance isn’t just about our relationship with our own culture. The LGBTQ+ community still suffers from a racism issue and honestly, there are still plenty of problematic gay people who don’t want Asian people because of certain stereotypes.

You can be gay and you can be Muslim

Sameer Poselay, 25, is a scientist based in London

I realised I was gay when I was eight. It was not easy, but I wasn’t too fussed until I reached secondary school, where I discovered any association with homosexuality was seen as a joke and laughable.

At school, teachers and my peers were openly and casually homophobic. My family never discussed homosexuality and didn’t express a like for it. My religious community had no place for it either.

Being South Asian, I had a cultural pressure to be the dutiful son. From the age of 15, when I should’ve been thinking about GCSEs, I grew up thinking I would have to marry a woman and live a lie my entire life. I was constantly in fear of being outed.

‘The first person I came out to was my Dad. He surprised me with how calmly and amazingly he approached the conversation’

But I also grew up Muslim. It was a huge mental struggle because on one hand, I was told God doesn’t accept me, but I was also told that he loves me. It was a constant balancing act and until I eventually realised that ‘religious’ homophobia is a cultural behaviour. My existence is affirmation enough that you can be gay and you can be Muslim.

‘Both of my parents continue to love me and treat me no differently’

I came out over a period of two to three years. The first person I came out to was my Dad. He surprised me with how calmly and amazingly he approached the conversation.

He had no idea I was gay, and I expected to be thrown out and made homeless, but his reaction helped me educate him on LGBT issues.

My mother was a year later; she is the more religious of the two. She was massively upset and cried. She said she felt guilty for allowing me to be in an environment that caused me so much pain, anxiety and depression. Both of them continue to love me and treat me no differently.

Acceptance can make a huge difference in someone’s life. If your family isn’t understanding, know that you are valid and you matter. Being open about your sexuality is an act of making the world a better place for future LGBT generations.

Brighton is the UK’s gay capital, but I experienced so much racism I believed being gay was a white people thing

Natalie works in the NGO sector and lives in Croydon

My parents were ostracised by the South Asian community for having an interracial marriage and eloping. My mother is Gujarati and my Dad is English, and though I identify as mixed-race, I still consider myself as Hindu and part of the Gujarati community.

‘I experienced so much racism living there as the only brown person in my school, that I truly believed being gay was a white people thing’

I’m pansexual and I spent my teenage years in Brighton – a place meant to be the gay capital of the UK. But I experienced so much racism living there as the only brown person in my school, that I truly believed being gay was a white people thing. I hadn’t seen or even knew of any Indian LGBT+ women to even look to, to know that my existence was even valid.

I did a very convincing job of fitting into heteronormativity. I have a lot of women in my life as friends but I was also sexually attracted to other women and I became very afraid of what my friends would think. So I tried to ignore it and I ended up hating myself for a long time.

I always knew Mum had suffered enough for leaving her family to marry a white person. I was determined to try and find a nice man to marry, but when I turned 30, I decided to come out.

My dad didn’t bat an eyelid. I think he already knew anyway. I took longer to tell my mum, which ended up coming out in a less than ideal way. She overheard me talking to a girl I was seeing and she asked about it. I told her the truth.

We still haven’t had a full conversation about my sexuality. She texted me to say that she is trying her best to accept it, but she is still mourning the child she thought she had and she does feel shame about it. She doesn’t think two women can have a child, which is something she knows I want.

It’s painful to read that, but I am willing to be patient. I have faith that although I know she doesn’t agree with it, she loves me more as her child and wants me to be happy.

What happens in India does impact us here, even though we underplay it, because it could help us have conversations with our families. LGBT+ people in India are still treated like crap but the legal context of Section 377 is huge. I think it could be a way for us to talk more about consent, what queer Indian relationships can look like or be, and how the third gender has always been a part of our history.

Representation is important: I went on to work for Stonewall and address tackling racism within the LGBT community in the UK, and found UK Black Pride, where I now work as Community Engagement Officer, which makes me feel like I can be myself – and be proud.

Parkinson’s disease is a progressive neurological condition which happens when levels of a chemical messenger in the brain called dopamine become too low.

Parkinson’s disease affects about 145,000 people in the UK, according to Parkinson’s UK. The NHS estimates one in 20 people with Parkinson’s will first experience symptoms before the age of 40. Parkinson’s UK told i it often hears from people who are diagnosed years after they first experienced symptoms because of the gradual way in which they begin.

There are more than 40 symptoms, the most common being tremors, as well as muscle stiffness, depression, anxiety, hallucinations, memory problems and dementia.

Parkinson’s UK says people with the condition can also struggle with the impact on their mental health.

One such person is Hema Reilly, 54, a retired social care worker from Leicester. She experienced symptoms for more than a decade before her diagnosis.

After she was diagnosed in 2016, Hema found it very difficult to adjust, not just to the physical changes, but to how it affected her mental health. She found engaging with support groups hugely helpful and has even launched her own group to raise awareness of the disease, particularly in the South Asian community.

‘I had no idea how we were going to pay the mortgage’

Hema Reilly was diagnosed with Parkinson’s more than a decade after she she first began experiencing symptoms

“I had just taken on a half a million-pound mortgage to buy a bungalow at the bottom of our garden for my mother to live in. She had been ill and I had a good job as a social worker and a decent salary.

But in a matter of months, I had to give up my job because I had been diagnosed with Parkinson’s at the age of 51. With my husband retired, I had no idea how I was going to pay the mortgage, let alone wrap my head around a condition that would progressively get worse and affect every aspect of my life.

‘My symptoms affected me to the extent that I was struggling to write, but I brushed it off, and put it down to stress’

Even though I was only diagnosed in 2016, I started to develop symptoms nearly 15 years ago. It started with a slight tremor in my hand and my legs started shaking occasionally.

Things became significantly worse in 2005. I was in the process of adopting my son, who was 18 months at the time, and it was a really intense period. At one point we weren’t sure whether the adoption would go through. My symptoms affected me to the extent that I was struggling to write, but I brushed it off, and put it down to stress.

The symptoms eased off once the adoption went through and bringing up a baby meant it was a busy time. I noticed the odd twinge now and again, but it started to resurface with a vengeance in 2014.

In 2016, it was so bad, people at work were noticing how it was affecting me. I had tremors and I was unsteady on my feet. I struggled to write, my speech was slightly affected, and I dropped things. My managers were concerned for my wellbeing, but even though the symptoms were bad, I dealt with it by blanking it out. I just didn’t want to acknowledge it – I had a lot to lose. I was working on my career, and I loved it. It was very demanding and the job was physical – I was out in the field a lot.

But things came to a head when I fell at a foster family’s home and broke my hand. I went to the doctor because I was on sick leave and needed to get checked out for health and safety reasons to make sure I’d be okay going back into the field.

I told them everything else that had been going on with my symptoms. They sent me to see a neurologist and he diagnosed me with Parkinson’s straight away. He told me there was no cure but that they could give me Sinemet, a medication to control my tremors.

While he explained the diagnosis, I didn’t understand what it actually meant for my day-to-day life. Then I did the worst thing I could’ve done – I came home and Googled it.

I was given a contact number for the Parkinson’s nurse, and the nursing service was brilliant, but I didn’t see her until six months later.

‘I went from someone who had worked seven days a week to someone who now had a huge mortgage’

During that time, I had to figure out what to do about work. My workplace helped me for a few months with aids and adaptations. But I started going downhill very quickly. My tremor worsened and my right leg was really bad. I had several falls and injured my knee on my right side. I got a walking stick but it became unsafe for me to work.

It was clear I wouldn’t be able to continue. My manager secured an amazing retirement deal for me, but I went from someone who had worked seven days a week to someone who now had a huge mortgage.

However, I got a good settlement on my pension, and I still owned my old house which was being rented out. I sold that and together, paid off the mortgage completely.

For living costs, I still needed to go on benefits. I’ve been working since I was 17 and have never claimed a penny. Trying to navigate your way through the benefits system is tough. And if you have Parkinson’s, your hands are shaking, and they give you all these forms, and you think ‘how am I going to fill this in?’

‘In Asian families, Parkinson’s is hard to explain. My mother started sobbing and said it was like a curse – she thought it was a death sentence’

It was a nightmare, but Parkinsons UK sent someone out to help me understand the benefits system and provide moral support. I also had family. I told my nieces and nephews who are young adults, and they were incredibly loving and understanding. They helped me with the information about my medication, and the paperwork.

The hardest part

The hardest part was telling my mum, which I did a month after my diagnosis. In Asian families, Parkinson’s is hard to explain. My mum started sobbing and said it was like a curse – she thought it was a death sentence. I told her it wasn’t going to kill me and she came round after the rest of my family explained it to her.

Within the community, I got responses like ‘God will make it better’ and ‘just pray’. I tried really hard to explain there is no cure and it’s nothing to do with God. It got to the point where it used to depress me – people wouldn’t sit next to me because they thought you could catch it.

I stopped going to community events, which was a big deal for me, as I was the president of our community in Leicester. But after the initial shock, I thought no, I needed to educate these people. With the help of my therapist – without whom I’m sure I would’ve taken my own life – I realised I needed it to explain to them. ‘Go and see this priest’ wasn’t going to work for me.

My nephew took me to a Parkinson’s support group in Loughborough where you can talk to people and do some exercise. It helped so much I wanted to do something for my own community, so I decided to set up a support group called the Leicester Parkinson’s Café in June, with the help of Parkinson’s UK, which runs once a month. It’s right in the middle of the Golden Mile in Leicester where the South Asian community is mainly based, and I wanted it to work as a drop-in. It was here that I started to explain about Parkinson’s to the South Asian community at various events we would run.

Picture: John Birdsall

Every meeting, we have someone who does a talk. Last month I took along forms for council tax benefits, then I took exercise balls to show them how to do exercises. They can talk about what’s on their mind and their medication. There is always plenty of food and Indian tea.

It has given me a new sense of purpose, and that’s incredibly important.”

Katie Goates, Professional Engagement Programme Manager for Parkinson’s UK says: “Diagnosis can take time as there is currently no definitive test for Parkinson’s. To improve diagnosis times, more people need to be aware of the signs and symptoms of Parkinson’s.

“Last week, NHS England launched a new toolkit, developed in partnership with Parkinson’s UK and other charities, to help improve diagnosis and coordination of care for people with progressive neurological conditions. We are now urging health leaders to work with charities and implement the new toolkit, so they can make the changes in diagnosis times that people like Hema so desperately need.”

I haven’t been to the doctor since I took up competitive weight-training about a year ago, but in need of a prescription for the pill, I made an appointment.

It was all fairly straightforward – I told her my reasons for going on it, and she took my blood pressure. She asked me for my weight, and then my height, and I knew she was going to talk about BMI – Body Mass Index – the universal screening tool to assess if your weight is within a healthy range.

“Your BMI is 26,” the doctor said, giving me a meaningful look. The normal range of a person’s BMI is 18.5-24.9kg/m2, and is derived from your weight and height. It does not distinguish between lean muscle and fat tissue.

Before she could say anything more, I cut her off by saying: “I do weights, that’s why it’s higher.” The reason I cut her off was because increasingly, I’ve been hearing about how perfectly healthy people are being are being lectured about their BMI and losing weight, without finding out how fit that person is, what type of training they do, and whether or not they have a history of eating disorders that might make the conversation triggering.

She did, however, acknowledge that BMI wasn’t a great indicator but that doctors “had to say it anyway” to patients as part of due diligence.

But the damage was done and I then spent the next few days obsessing about it being too high. This type of doctor-patient interaction first came to my attention through my own sister Priya, who is a size 10 and follows the CrossFit fitness programme, and was told to lose three kilograms during a routine medical by doctors who had used guesswork to calculate her BMI.

‘Muscle is much denser than fat. So for muscular people such as weight trainers and athletes, their weight may be healthy even though their BMI is classified as obese’ – Sejal Jacob, dietician

“She was asking me to reduce five per cent of my body weight – I was 60kg – in this really cavalier way,” Priya said, “without knowing anything about my personal history or if I’d had a history of eating disorders. Luckily I don’t, and I do intuitive eating, but this still stuck in my mind for several weeks afterwards. It was really irresponsible.”

BMI has been widely criticised in the last few years, not just for the blunt way in which doctors interpret it, but because it was invented in the 19th century. The guidelines for weight and risk, for instance, have evolved alongside other developments in medicine.

“Our weight is a representation of muscle, bones, fat and water,” says Sejal Jacob, spokesperson and dietitian. “Sixty to 70 per cent of our body is water. Hence, just the single measure will not provide a comprehensive overview. Muscle is much denser than fat. So for muscular people such as weight trainers and athletes, their weight may be healthy even though their BMI is classified as obese.

“NICE (National Institute for Health and Care Excellence) urges caution on interpretation of BMI and highlights the need for clinical judgement.”

But the problem seems to be that caution isn’t being used, and that BMI is being wielded clumsily and in broad strokes.

“It’s a brief intervention aimed at reducing behaviours like smoking and alcohol. Although not a behaviour, weight reduction is included in this initiative. So theoretically someone could go to their GP about a sore throat or ear infection and be sent home with a referral to Slimming World. This can leave the patient feeling shamed, embarrassed or dismissed by their doctor.

“This can stop them from going to their doctor for routine or preventative care for fear they will just be told to lose weight. Because they are by nature a brief intervention, it doesn’t allow the doctor to ask important assessment questions about eating disorder or disordered eating, past diet attempts, or whether they are currently engaging in health-promoting behaviours.”

“The GP proceeded to ask me whether I like takeaways and how often I eat them. I was not eating takeaways, I was swimming every week, walking to work, eating a balanced diet and not drinking to excess,” says Amy (Photo LEON NEAL/AFP/Getty Images)

Amy, 29, a communications manager who lives in Kent and is a size 14, identifies with this, after an encounter with a GP led to her not engaging with a doctor for several years.

During a visit for repetitive strain in her wrist, she says: “The GP proceeded to ask me whether I like takeaways and how often I eat them. I was not eating takeaways, I was swimming every week, walking to work, eating a balanced diet and not drinking to excess. She made it clear she didn’t believe me and suggested I do more exercise to get the weight off.

‘The practice nurse took my height and weight and told me I was dangerously overweight and started giving me diet advice once more. I completely froze and started crying’ – Amy

“The whole experience meant it took several years before I registered with a new GP. At my initial appointment, the practice nurse took my height and weight and told me I was dangerously overweight and started giving me diet advice once more. I completely froze and started crying. I had only done this so I could book a smear test. I did not attend said smear test because, once more, had been made to feel dreadful and judged.”

The conflation of body weight with health is a recurring story when it comes to BMI and people who do strength sports or play rugby. Justin, 32, a business intelligence developer from Manchester, said he gained a lot of weight when he was injured and was told that he was morbidly obese at 18st 8lb.

He spent two years focusing on diet and exercise and went down to 12st 5lb. He now has 14 per cent body fat.

“I run 20 miles a week and weight train three times a week,” he says. “Last week my doctor told me my BMI was too high and I needed to lose weight. I just feel like there’s no winning. I’m in the best shape of my life but their sliding scale says I’m unhealthy.

“The thing that causes me the most concern is that with the NHS’s reliance on it, will I be denied treatment for something down the line because I’m a higher risk according to my BMI despite being in very good shape?”

Professor Helen Stokes-Lampard, Chair of the Royal College of GPs, said: “GPs are highly trained to have sensitive, non-judgemental conversations about how a patient’s weight might be affecting their health and wellbeing – and to recommend lifestyle changes that could improve it.”

But, she does acknowledge GPs need more time with their patients to unravel the many complex issues affecting a patient’s weight, “especially if this not the main reason they visit us in the first place, and the current standard 10-minute appointment simply isn’t long enough.” For this, she wants to see more investment injected into primary care.

Dr Punam Krishan, a practising GP, says compassion and common sense needs to be applied in the doctor’s surgery when it comes to BMI. “One size does not fit all. Guidelines are there to guide us but are not bible. Patients come from various different backgrounds, cultures, follow varied lifestyles and it would be naïve to assume that the same numbers and treatment plans will work for everyone in the same way.”

Cardiomyopathy is a disease of the heart muscle that affects the heart’s ability to pump blood around the body. It is the top cause of sudden cardiac death in young people.

It’s known as the silent killer because it is hard to detect – symptoms can be commonly associated with other more common conditions such as asthma and anxiety. These symptoms can include exhaustion, breathlessness (or feeling like the heart is fluttering) and dizziness.

Cardiomyopathy affects one in 500 people, but awareness around the disease is low. According to Cardiomyopathy UK, if the gaps between services were tightened and waiting times were reduced, there would be quicker diagnoses and more lives could be saved. The charity believes targeted cardiac screenings should be a top priority for the Government and healthcare professionals, as well as raising awareness among the general public about why it’s important for families to talk about their medical history as cardiomyopathy can be genetic.

Cardiomyopathy symptoms include:

Heart palpitations, tiredness, breathlessness, swelling in the abdomen or ankles, pain in the chest and dizziness or fainting

Cardiomyopathy UK recently ran a survey of more than 600 people and found 48 per cent of cardiomyopathy patients were not referred to a cardiologist despite reporting cardiac symptoms such as heart palpitations and breathlessness. Seventeen per cent waited over a year for diagnosis.

Deborah May, 33, who works as a digital marketing manager in northeast England, was not officially diagnosed with cardiomyopathy, despite having symptoms for nearly two years. Her symptoms, which started in 2013, were intially diagnosed as anxiety. She had no family history of the disease.

The majority of cardiomyopathy cases are genetic, which means people should get tested if they know a family member who has it. Joel Rose, chief executive of Cardiomyopathy UK, told i: “If you or a family member find yourself with similar symptoms to Deborah, such as heart palpitations, tiredness, breathlessness, swelling in the abdomen or ankles, pain in the chest and dizziness or fainting – you should speak to your doctor immediately and tell them you’re worried about your heart.

“When cardiomyopathy is detected early and treated appropriately, symptoms can be controlled and the risk of sudden cardiac arrest can be better managed.”

Here, i speaks to Deborah about her experience.

Fainting at a wedding was the best thing that happened

“I had given birth to my son George five months previously, and I remember lifting him out of his cot and feeling breathless and tired. I felt the same when I was putting clothes in the washing machine and thought it was odd – sometimes I’d have to stop and catch my breath even while just out for a walk.

At the time, I thought it was general tiredness from having a baby and it would pass. But a month later, the symptoms were still there – the tiredness would come on even if I hadn’t exerted myself, and I still couldn’t catch my breath.

I went to see the doctor and they said they would do a general blood test and check my thyroid. But they came back fine. Then it was back to square one of leaving it to see if symptoms went away, and when they didn’t, it was back to the doctors.

‘I’d go to baby group and need to leave halfway through because I felt like I was going to pass out’

My husband Kris was becoming concerned because no one seemed to have an answer. All the back and forth between doctors, as well as not knowing what was wrong, was taking its toll. I wasn’t sleeping well, and I remember playing with George and it always being at the back of my mind. I’d go to baby group and need to leave halfway through because I felt like I was going to pass out.

When I went back to work, everyone commented on the fact that I lost a lot of weight, which I think I had lost due to worry.

‘I’ve been told I can’t have any more children because of the pressure it puts on the heart’

I was diagnosed with postnatal depression (PND) and anxiety because of where my cardiomyopathy symptoms overlapped. I didn’t go to the doctor and say I was stressed and anxious, but they interpreted my symptoms of my heart beating fast and feeling tired with anxiety and PND. And it was a bit chicken and egg because I was anxious about my physical symptoms and no-one giving me a proper diagnosis. I got referred for CBT and then put on anxiety medication.

A year later, we attended a wedding and I fainted. In hindsight, it was one of the best things that happened. I was taken to hospital as people were worried I’d hit my head, and I told the A&E doctor that I often felt dizzy and breathless but that my GP didn’t think anything was wrong.

He did an ECG which came back fine, but told me to push the matter with my GP.

When I went back to the doctor, he told me the issue was low blood pressure. But he did refer me to the hospital to investigate the low blood pressure, and once I was there, the doctor thought she heard a heart murmur. Finally, I was referred to cardiology.

Everything then happened fairly quickly and I had an ECG, a heart monitor and an echocardiogram.

‘I have struggled with the fact that I’ve been told I can’t have any more children because of the pressure it puts on the heart’

I had a diagnosis in March 2015 – nearly two years after I first presented with symptoms. They said it could be viral, genetic or caused by pregnancy. Initially, I was diagnosed with peripartum cardiomyopathy (PPCM) but then they changed it to dilated cardiomyopathy (DCM) because it was so long after the pregnancy that I was diagnosed. I have to have yearly reviews with an ECG and echocardiogram, and I’m on daily medication. Kris was with me when they told me. As soon as I heard the news I went into meltdown – I thought my life was over because of what I’d Googled previously. But he took control and we asked questions, and once I got my head around it, we were better informed.

It’s not great, and definitely not what I expected to hear at 29. I have also struggled with the fact that I’ve been told I can’t have any more children because of the pressure it puts on the heart. But, I feel lucky I have the NHS and I’m on a medication called ramipril to manage it, which doesn’t give me side effects.”

An NHS spokesperson said: “We are committed to improving care for people with all types of heart disease, and the NHS Long Term Plan sets out how we will do this by expanding genetic testing for those who have inherited a high risk of developing disease, improving access to heart tests in the community, and increasing the number of heart failure nurses in hospitals – saving thousands more lives over the next decade.”

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